CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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@jesfactsmon

@gingerw
Hi Ginger, I am thinking about this cbd oil from CBDistillery which you have had good luck with and have another question. @lorirenee1 also mentioned to someone that she gets hers from this same company and she takes the 2500 mg strength bottle. Linda (my wife) has terrible intractable pain in her feet so I would be inclined to order that as well. Just wondering, which strength do you order and is there any downside to ordering the 2500 mg as opposed to the lower strength options, in your opinion? Lori, feel free to chime in as well. I figure, the stronger the better, but in the past I have found one should never assume anything without checking.

I am getting to my wits end as to what to do. Linda takes kratom occasionally and does marijuana as well, but does not like the side effect of having to be high just to get rid of pain. I'm thinking maybe the THC free cbd oil may be a good aid in achieving this. We ordered some from another company about a year ago and it did nothing for her, but it may have been, excuse the expression, crap, (probably was, I was ordering blind).

Thanks, Hank

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@jesfactsmon Hank, their website has a great educational tool for you to learn about CBD products. I usually get the 2500 mg bottle. All tinctures are the same size bottle, the strength is variable. So, I get more for my money, the bottle lasts longer, and I use less to take the amount I want. Tinctures are the quickest delivery into your system.

Generally, a "full spectrum" product will include no more than .03% THC. A "broad spectrum" product has no THC.

There is much to be said for each person finding what works for them, on any given day. My chronic pain relief can vary based on weather and previous day's activity level.
Ginger

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@gingerw

@jesfactsmon Hank, their website has a great educational tool for you to learn about CBD products. I usually get the 2500 mg bottle. All tinctures are the same size bottle, the strength is variable. So, I get more for my money, the bottle lasts longer, and I use less to take the amount I want. Tinctures are the quickest delivery into your system.

Generally, a "full spectrum" product will include no more than .03% THC. A "broad spectrum" product has no THC.

There is much to be said for each person finding what works for them, on any given day. My chronic pain relief can vary based on weather and previous day's activity level.
Ginger

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@jesfactsmon @gingerw Yes, I also use CBD Distillery, and get the 2500 mg. with the touch of THC. I like this large mg. size, cause it is really potent, and I can adjust the amount I want to use. I use about a half of a dropper full, to distance the pain. A full dropper, I swear, makes me feel high, like marijuana. I hate marijuana, and don't like the feeling of being high at all. I don't find it a good answer to my pain, and have tried everything under the sun when it comes to marijuana. I also find the CBD to be relaxing, and use a whole dropper before sleep. I also have the 2500 mg. CBD oil, without the THC, but I don't think it helps distance the pain as well. I am not buying it again. All in all, for me, the CBD just distances pain. I get kinda drugged feeling, and the pain is more distant. Frankly, I am not too nuts about any of it. That is why Kratom works better for me. I am lucky that it takes pain away, without drugged up side effects. Sick of being sick. God awful. Lori Renee1

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@jesfactsmon

@bustrbrwn22
Thanks Jen, nice to see you back posting on Connect again. Missed you! So, can you tell me what the strength is of the cbd oil you guys use? Just trying to get a feel for dosage vis-a-vis effectiveness, and without overdoing it when not good or not necessary. I am specifically trying to come up with a solution of something Linda can take on nights when her pain is so bad she can't possibly sleep (like last night unfortunately) and which will soothe her pain but not make her high, which always affects her ability to go to sleep. BTW, I am thinking of ordering the 2500 mg strength bottle, I guess that's per dropperful.
Thanks, Hank

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@bustrbrwn22 @jesfactsmon I also have CBD oil from Lazurus! They are much cheaper than CBD Distillery, and their product is good. I buy the High Potency 3,000 mg. with a touch of THC. Comparable to the CBD Distillery CBD, but way cheaper. Too save money, I buy both, but actually prefer the CBD Distillery. Also, I use a half dropper of the Lazurus, or start feeling high! Both companies make real, fabulous stuff. Lori Renee 1

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@lorirenee1

@bustrbrwn22 @jesfactsmon I also have CBD oil from Lazurus! They are much cheaper than CBD Distillery, and their product is good. I buy the High Potency 3,000 mg. with a touch of THC. Comparable to the CBD Distillery CBD, but way cheaper. Too save money, I buy both, but actually prefer the CBD Distillery. Also, I use a half dropper of the Lazurus, or start feeling high! Both companies make real, fabulous stuff. Lori Renee 1

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@lorirenee1 I am curious about preferring the one brand, but also buying a cheaper line?
Do you find a lesser quality in the lower priced brand, or inconsistencies?
Ginger

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Does anyone else deal with CRPS type 2 Howell issues? Starting to freak me out severe abdominal pains urgency then nothing or just feels like extreme diareaha water basically

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@gingerw

@lorirenee1 I am curious about preferring the one brand, but also buying a cheaper line?
Do you find a lesser quality in the lower priced brand, or inconsistencies?
Ginger

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@gingerw I really do like both brands quite a bit, and to save money, buy the cheaper brand, and rotate their use. Lazurus is substantially cheaper than CBDistillery, and works quite well. I buy the 3000 mg. High Potency CBD with the .03 THC at Lazurus, and it is comparable to the strength of the CBD at CBD Distillery. The bottle is twice the size of the CBDistillery bottle, and works very well. I just like CBDistillery a bit more. Lori

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@missbiss

Does anyone else deal with CRPS type 2 Howell issues? Starting to freak me out severe abdominal pains urgency then nothing or just feels like extreme diareaha water basically

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@missbiss It sounds like you are concerned because you are having severe abominable pain and diarrhea. You mentioned in the past that you have CRPS. Diarrhea can be serious if you are unable to retain water. May I ask if your abominable pain and diarrhea has increased lately and what your provider recommends for your symptoms?

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@santafe

Am new to this forum as of today. Friend suggested it as a possible "support system" for me. I developed CRPS 3 years ago after fracturing my Rt ankle on both sides. Had typical ankle repair surgery with hardware, but then needed hardware removed because I couldn't tolerate it - as the pain was tremendous. My whole life changed because of my pain. I was just "officially" diagnosed with CRPS a couple of months ago despite having many of the classic symptoms of it: intense pain lasting longer than 6 months, color and temperature changes to my Rt foot, muscle spasms and atrophy. Had many doctors and physical therapists tell me " I think you might have CRPS" yet none were willing to make the definitive diagnoses. Seemed like they were afraid to but I don't know why. So long story short - I spent almost 3 years thinking "maybe it's all in my head, maybe I'm not trying hard enough to get better, maybe I need to suck it up when it comes to the pain". Feel very cynical when it comes to the medical community now. My ankle pain has spread to just below my knee- like a "knee sock of pain". It has affected all parts of my life: my livelihood (don't have one anymore), financially, emotionally, mentally. I have lost friends and family because of my fluctuating emotions related to pain. I try very hard to keep it all in perspective as I don't want or need anyone's sympathy. CRPS is not a death sentence - however it is a"life sentence" and my goal is keep my mobility for as long as I can and not let CRPS rob me life's joys that are still available to me on a daily basis.

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Hello 👋 nice to see you here. I understand the impact of pain on life, liberty, and the pursuit of happiness. It can literally suck the energy from your soul if you aren’t careful. That’s what we’re here for, to remind you what in this world is actually worth the sacrifice of living with the pain.

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@basslakeview

What's the difference between that and fibromyalgia/chronic fatigue, which is what I've been told I have.

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Hi there. Fibromyalgia and chronic fatigue are tough to manage and horrendous to live with. I'm so sorry you struggle with these disease states. I have a good friend in the same boat.
CRPS is known as the Suicide Disease and comes in two types, Type 1 - no nerve damage and Type 2 - nerve damage. They are working on validating a Type 3 with is non-specific but it's questionable at this time worldwide. CRPS is usually but not always associated with surgery, but can be associated with an injury. NOT always a major injury or surgery, it can be anything - a sprained ankle even.

Complex Regional Pain Syndrome has been known as RSD (Type 1), Causalgia (Type 2), and has been around since the Civil War.

It begins usually in a peripheral area like the foot or the hand. Pain is intense and resembles burning, aching, or shooting nerve-type pain. Sensitivity to touch can accompany it. Explanations at first can be the surgery involved, rehab, psychological, etc. But the pain never goes away, but intensifies over time. Why?

The Brain: Via the Central Nervous System, the brain is in control of the pain and is the culprit. After the injury is supposed to have healed and the body corrected the issue, the pain continues and even amplifies due to the brain. The brain causes WINDUP.

WINDUP: Windup is when the brain believes there is a problem, an injury, and sends impulses through the nervous system to the affected area over and over to alert the body to protect itself. It goes into overdrive and in the case of CRPS and WINDUP, doesn't shut down. It doesn't know that there isn't really an injury or a problem. The brain takes over.

THE SYMPTOMS AND SIGNS: INTENSE PAIN, BURNING, SHOOTING PAIN, SEARING, LANCING, ALL NERVE PAIN AT THE SITE, RADIATING FROM THE SITE. PROGRESSIVE CRPS MOVING TO OTHER AREAS OF THE BODY.

Muscle cramps from the nerves seizing related muscles. Joint pain from the seizing muscles pulling at the joints. Headaches, migraine and tension from unrelieved pain. Inability to walk or lie down or stand for any length of time due to the pain pulling at the body.

Depression, anxiety, and sheer frustration from lack of adequate pain management.

The list goes on.

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@erikas

@missbiss It sounds like you are concerned because you are having severe abominable pain and diarrhea. You mentioned in the past that you have CRPS. Diarrhea can be serious if you are unable to retain water. May I ask if your abominable pain and diarrhea has increased lately and what your provider recommends for your symptoms?

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CRPS can move into the abdomen and intestines.

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